The World Federation of Hemophilia (WFH) and the European Haemophilia Consortium (EHC) are pleased to announce that they have signed a new Memorandum of Understanding (MoU) to update the way both organizations work together to improve the welfare of people with haemophilia and other inherited bleeding disorders in Europe. Both organizations operate with the same national member organisations (NMOs) in Europe and share similar goals and visions.
This MoU continues, builds on, and refines a collaboration between the WFH and the EHC that has spanned more than 30 years. “The WFH and EHC have worked together for many years to help support the bleeding disorders community in Europe,” says Cesar Garrido, WFH President. “This new MoU continues to formalize that special partnership which has been productive for so long.”
“We have had multiple MoUs over the years,” says Declan Noone, EHC President. “As our organizations and the landscapes in which we operate naturally evolve, it is important to check-in with, and when necessary, to update, such MoUs to ensure they remain fit-for-purpose and facilitate the best conditions for our collaboration and partnership.”
The new MoU respects the independence of both organizations and underlines the importance of collaboration at all levels. The EHC will continue to manage contacts with European institutions, while the WFH will do so with global institutions. Both organizations will continue to communicate closely on activities to ensure that they work complementarily and do not duplicate efforts.
To read the full MoU, please click here.
Jim is aged 66 and has Haemophilia A with a high titer inhibitor which he developed at age 14.
Maria Elisa Mancuso (MD, PhD) is a Haematologist and works as a Senior Haematology Consultant at the Center for Thrombosis and Haemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Haematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals a The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE) and was a medical member of the Inhibitor Working Group of the European Hemophilia Consortium. She is co-chair of the ADVANCE Study Group. She has acted also as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, inhibitors, and chronic hepatitis C.
As a patient with factor II deficiency, the diagnostic and treatment of rare bleeding disorders is a matter dear to my heart. My motivation to participate in the work of the ERIN committee is to improve both diagnostic and treatment for patients with rare bleeding disorders across Europe.
Economist and financial expert by profession, executive coach and trainer by passion and haemophilia advocate by every drop of my blood through my son (who has severe haemophilia A with inhibitors). Bringing a good decade of practical experience from the corporate insurance world, laser focus, growth mindset and resilience from my own experience, offering you anything I can just do, in hope that together we can make life more fulfilled for those impacted by bleeding disorders.
Amy Owen-Wyard is a Registered Mental Health Nurse. With experience working with children, young people, their families and adults with severe and enduring mental health conditions. Amy was also involved in a service improvement to provide a holistic care approach for those in general hospitals to support both their mental and physical health, whilst sharing her expertise and knowledge in mental health with the wider multidisciplinary team.
